ME/CFS and Fibromyalgia: Rebuilding Life in the Face of Loss

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Natural disasters like the Asian tsunami and Haitian Earthquake bring home the enormous challenge of rebuilding life after dramatic loss. Though those who suffer from invisible illness such as fibromyalgia and Chronic Fatigue Syndrome may not appear to be different from normal, they too experience loss and must rebuild their lives. Here’s how one CFS patient struggled to redefine himself. (It is adapted and reproduced with permission from the online booklet Recovery from Chronic Fatigue Syndrome: One Person’s Story.)


CFS transformed me in a matter of days from a healthy person to someone functioning at 25%.

As my symptoms persisted, I came to realize that CFS was not a temporary interruption of my life, but rather had become the central fact around which my life revolved. Much of what I considered “me” had been taken away. The losses brought by the illness created one of my greatest challenges in living with CFS: redefining myself in the face of loss.

Looking back, it’s obvious to me that one of my initial responses to the loss of my old life was denial, which took the form of telling myself that I would be one of the lucky ones and would recover. I’d have to say that the idea, implausible as it seemed after the fact, worked for a year or more to enable me to keep hope alive.

• Having hope, I was able to begin accepting the losses and uncertainties.

• Later, when I accepted that recovery was unlikely, I found hope in the progress I had made and in the conviction that, even if didn’t recover, I could still find ways to bring meaning to my life.

• Also, gaining some control over the illness helped reduce the amount of uncertainty in my life.

When Elizabeth Kubler-Ross described responses to loss, her end stage was acceptance. I could identify with that in part, but for me the final stage was more complex.

As noted in another article (“Is Recovery a Realistic Goal?”) acceptance meant recognizing that my life had changed, perhaps permanently and certainly for an extended period of time. It meant letting go of my past life and also of the future I had envisioned for myself. But it had another component as well, a confidence that I could find things to improve my life.

I called the combination acceptance with a fighting spirit.

Moving Through Grief
CFS stripped away most of what I viewed as myself. Because of my illness, I gave up work and volunteer commitments, let most relationships slide, lost my ability to be physically active, and replaced an optimistic view of my future with uncertainty.

I did two things to cope with my losses. The first was to publicly acknowledge the loss. In a Christmas letter sent a year and a half after getting CFS, I wrote to friends that I had been living with a disease for which there was no standard treatment or cure. And I concluded: “I am sobered by the realization that it is highly unlikely that I will return to the level of functioning that I had before becoming ill and so probably will have to adjust to living a life with greater limits than before.”

Even though I wrote to alert others to expect less of me, I think the more profound effects were on me. The public declaration helped me recognize the extent of my loss and the possibility that it was permanent.

Moving Beyond Loss
While accepting that my life had changed, I had the conviction that whatever happened it would still be possible to have a good life. That conviction helped me to accept the losses I had experienced. And I continued to believe that there were many things I could do to help myself. I believed that even if I didn’t recover, I could find things to improve my quality of life. This belief kept me moving forward in hope.

Within weeks of receiving my diagnosis, I joined two local CFS support groups. The experience was especially useful for the friends I made, one from each group. Both were very generous with their time, spending many hours talking to me about the medical, psychological and political aspects of CFS. They were tremendous sources of information and perspective, helping me to understand CFS much more quickly than I could have on my own.

Beyond these two relationships, being a part of the support groups gave me a sense of belonging, an experience of being connected to others like me. I found there is something powerfully healing about feeling understood, all the more so for a stigmatized disease that some people, even some doctors, don’t believe is real.

Because I stopped working and dropped out of my volunteer commitments shortly after becoming ill, fellow patients became perhaps my most important community. I think having that source of identification served me well. I took CFS patients to be my peers, not healthy people. That meant that I measured myself in comparison to them, not to co-workers or healthy friends. That comparison took a lot of pressure off.

I firmly believe that we all need to have meaning in our lives. My way to bring meaning to my new situation was through relationships and from the belief that, even though I had lost much, I could still contribute something. Helping others through the CFIDS & Fibromyalgia Self-Help Program  both provided an opportunity to create many new relationships and gave me a sense of purpose when previous sources of meaning had been lost.

I told myself that, even though my life might not be the one I expected, it could still be a good life. By focusing on what I could still do, I shifted my focus from loss to possibility. I told myself that even if I was unlikely to return to my old life, I could still create a new life by developing new interests and relationships, and by focusing on what I could still achieve.

Ironically, I have been given my old life back, but with a richness and meaning it wouldn’t have had without the illness.

Related Articles
“Grieving Your Losses”  – The stages of grief and how to move through them.

“Coming to Terms with Loss: A Personal Perspective” – CFIDS & FMS patient Linda Borell describes how an earlier experience of loss prepared her to deal with losses triggered by fibromyalgia

• The free online booklet, Recovery from Chronic Fatigue Syndrome: One Person’s Story.  It offers insights in 17 sections. Excerpts include:

From Chapter 9: Pre-Emptive Rest
“Over time, I came to believe that my scheduled rest was the most important thing I did to aid my recovery. Resting every day according to a fixed schedule, not just when I felt sick or tired, was part of a shift from living in response to symptoms to living a planned life. The experience showed me that rest could be used for more than recovering from doing too much; it could be employed as a preventive measure as well. In the terms suggested by one of the students in our self-help program, I learned the difference between recuperative rest and pre-emptive rest.”

From Chapter 13: Stress
“It took me a while to realize that in addition to these factors usually associated with long-term illness, there seemed to be something special about CFS that made me much more sensitive to stress than before. It was as if CFS had reset my “stress thermostat,” making me sensitive to more types of stress than before and increasing the effects of a given level of stress.”

From Chapter 14: Emotions
“I trained myself to mute my emotions after observing the toll from strong emotions, whether positive or negative. It seemed that any event that triggered the production of adrenaline made my symptoms worse.”

* Dr. Bruce Campbell is a recovered ME/CFS patient and former consultant to self-help programs for chronic illness at Stanford Medical School. His nonprofit site offers many articles and a series of low-cost online self help courses for FM and ME/CFS patients in moderated discussion group format. Sign up now for the Summer term, which begins June 7, 2010.

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One thought on “ME/CFS and Fibromyalgia: Rebuilding Life in the Face of Loss”

  1. drbeth2000 says:

    I felt it was important to point out that the “Stages of Grief,” referred to in Dr. Campbell’s article are considered ancient and irrelevant today.
    The stages were created by grief pioneer Kubler-Ross in the ’60s. This information is considered hopelessly dated by current grief therapists. It was thought by Kubbler Ross that you go through the stages and then you are finished.
    More current research suggests different numbers of stages; usually 4, all of which are ongoing and may be revisited.
    Grief does not end. It just gets less acute and we learn to live with our losses.
    1. Letting the loss sink in…on multiple levels. For us fibro people it may mean trying to do what we used to do until the fatigue finally convinces us that things have change; denying we are sick; refusing medication.
    Just when we accept one part we may discover some other loss, such as not being able to find the right medications; fearing that we will always feel this way; or being forced to cancel plans because we are having a flare.
    2.Feeling the pain; both the primary one (our health) and the secondary ones (like losing our job or having to limit activities. It may be having family that chooses not to believe in fibromyalgia or chronic fatigue
    3.Accepting the feelings that come with the diagnosis and cutting ourselves some slack. Ee grieve that we can’t get meaning our of going to work every day like we used to. It is painful to lose the normal routines, but we may fight that until total exhausion causes us to say “I am spent. I have to quit my job; change my life;” cut back on regular family obligations…whatever the norm used to be. A lot of people have to go into isolation to sort these issues out and make decisions about how to minimize stressors.
    4. Putting our emotional investment into new things that help us to feel self-esteem while not forgetting past abilities and achievements. In other words we miss the old us, but we take pride in the fact that we have adjusted to the best of our abilities in a situation that we would not have chosen. Support groups help us find like-minded people. One woman chose to lobby for better treatment and more research for these diseases. For others it may just be figuring out how to be present for our families in a different way or being satisfied with expecting less of ourselves.
    Don’t be surprised if you feel some grief that seems to come out of the blue. Moving forward will present new challenges. We have to give ourselves permission to make mistakes as part of learning to deal with a situation for which we have no prior experience. A counselor or understandng physician can help. By this point you are probably getting pretty good at researching about your illness. Take pride in your problem solving ability and accept the fact that some problems must just be accepted, rather than solved.
    Hope this helps. Beth Wheeling

    Some resources: William Worden, Terese Rando,Patricia McWilliams “Chronic Illness Workbook.”

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